Special Guest Dad Post: From Down Under!

We get readers from ALL over the world on this blog, so I thought I would share an email I got recently from K., a Dad in Melbourne, Australia, who bought the eGuide in May and sent this response:

Hi Kelly,

My wife and three week old son live in Melbourne, Australia.  I just wanted to say thank you for your time and resourcefulness in putting together your website on Branchial Cleft abnormalities.  I just purchased the eBook.

We noticed a small pore on our baby boy’s neck shortly after birth, and just today we had my internet self-diagnosis confirmed by the paediatrician (who had only seen it once before).  Your website, and particularly the picture you recently posted (which is identical to my son’s), was helpful in making me seek medical attention.  Obviously few general medical practitioners have seen this before.  We’re very fortunate to have one of the world’s best children’s hospitals here, and we’ll be taking him to see a paediatric ENT specialist soon.  Being the paranoid person I am, I’m also getting a renal ultrasound done, because the little guy also has a small ear tag (which is quite common in newborns, but can be associated with the Branchial Cleft Sinus and also kidney issues).  Thankfully, in all other areas, he is a very healthy young man, putting on weight like a machine.

Obviously, like you, I was pretty freaked out by this, mainly because of just how incredibly rare a condition it is.  It is comforting to know that, while the surgery will no doubt be a very nerve racking process, it is not a life threatening condition.  Thankfully my wife is a much less anxious person than me, and is not too worried.

I look forward to reading your ebook, and when we do finally get through all this, I will let you know the details of our specialists to add to your database to help others.  I am sure at some point in the future, someone else from Australia will contact you like I have.

                                                                                                                                                            

I envy you for having put this all behind you!

All the best,

K.

And just today, I got a the "rest" of their story with a link to their Australian specialist:

Hi Kelly,

Thanks again for your website and information presented with a personal touch.

We are yet to send our little man through surgery, as we felt it was best to wait until he was over 1.  We also decided to seek a second opinion, because the initial surgeon we were referred was a general surgeon and not an ENT specialist, and while he did perform 3-4 branchial cleft sinus/fistula excisions a year, we wanted to talk to an ENT expert.

So we took him to see this doctor: http://entparkville.com.au/about-us/dr-sarah-morrison-2/

She was very knowledgeable, and performs approximately 6 procedures like this per year.  She also, surprisingly, said that our son's was more likely a 3^rd or 4^thbranchial cleft fistula based on its position on his neck, but that we wouldn’t know for sure until the surgery.  We are going to do a couple of ultrasounds to see if that helps determine which type it is.  According to the doctor, the treatment of choice is now endoscopic cauterisation from inside the throat for 3^rd/4^th types (but not for 1^st/2^nd).  This effectively prevents infection.  Is this consistent with your understanding?

I did some reading and did find a few scholarly articles to support this idea:  http://www.ncbi.nlm.nih.gov/pubmed/23128685

I guess we will wait and see what the ultrasound suggests, and whether or not there is an opening in his throat (which means it definitely is a 3^rd/4^th).  If there isn’t, we’ll have no choice but to do the full excision anyway.   My wife and I are obviously very anxious, but if we can do something less invasive that will prevent infection, then I think that’s an acceptable outcome.

Thanks again.  Your suggested questions were very helpful to my wife when she saw the doctor yesterday.

Regards,

K.

AND FINALLY, the resolution to K's story, March 18, 2016: 

Hello again.

I’m pleased to say our son had his procedure yesterday, and all went well.  I stayed in hospital with him overnight and we’re now home.  Turns out it was a 2^ndbranchial cleft sinus, which went up into his tonsils.  This meant that they did a complete excision rather than the cauterization technique I mentioned would have been possible with a 3^rd/4^th fistula.

He had a single incision on his neck, which looks very similar to the post-op photo of your daughter.

Thanks again for taking the time to create your website.  It was the photo of the “pore” on your daughter’s that made me go and seek a specialist opinion for our son, so if it wasn’t for that we may not have done anything about it until he had an infection (which he thankfully never had).

If you get any other inquiries from Australia/Melbourne I’d be more than happy for you to pass on my email address.  We’re blessed to have one of the best children’s hospitals in the world, and a public health system that makes all of this free, including my own overnight stay (parking was my biggest expense).

Thanks again.

K